I will write about the details of our trip over the next couple of weeks but I wanted first first discuss how lupus reacted and impacted our trip. It was quite a feat for me to accomplish a 300 mile bike packing trip in the desert!
It’s been a while since last posting and you may assume it’s due to needing some distance from the trip prior to posting. It’s much more mundane than that: I’ve just been busy. Coming back from nearly 4 weeks off meant catching up on school and work; writing on here fell off the priority list!
A brief recap of lupus and me (perhaps repetitious for those who have been following this blog for awhile): an autoimmune disorder, a lupus flare is the result of the body’s immune system going crazy and attacking itself. Those with lupus must learn how to “manage” their lives to reduce symptoms. Symptoms are broad and affect people differently. For myself, I had significant joint issues (lupus arthritis); kidney interaction (lupus nephritis); blood clot (pulmonary embolism); extreme fatigue; and a variety of more minor manifestations (i.e. canker sores and hair loss). Not a ton is known about causes but they do know that both sunlight and stress can trigger flares.
Clearly, planning an extended bikepacking trip through the desert is not something a lot people with a chronic illness consider doing! I did speak with my medical team prior to embarking and had their support, with the caveats to (a) cover myself, constantly; and (b) to be mindful of how I was feeling. For the first one (cover myself), I invested in UPF cycle clothing. Clothing was definitely a better option over sunscreen and even Adam picked up sun sleeves in lieu of constantly slathering on sunscreen. I went with Pearl Izumi leg- and arm-sleeves; a jersey from Terry; and the Da Brim really did keep the sun off my face. All items were UPF 50.
Being mindful of how I was feeling was a bit trickier. It was often hard to distinguish whether I was tired because I was out of shape, exhausted from the heat, or if it was a reaction to lupus. Ultimately, I feel that although being out of shape and experience heat exhaustion were clearly factors, it was lupus that exacerbated these impacts. Fatigue related to autoimmune issues are very different than being tired (even if it is from cycling all day). The entire body wants to shut down. Eating – the motion of chewing – was a physical demand that was exhausting to me, even though I was biking all day. This was the primary symptom I experienced. I had a few days where a joint or two was achy but it generally went away with sleep. The fatigue, however, was harder to shake. I could not force my body to go faster or longer; the 25ish miles a day we were averaging was truly at my peak and upper limit.
This physical limitation was initially frustrating. The first couple of days of pushing the bike, combined with the heat, I was able to accept and shake it off. I knew that physical fatigue would be normal until I was accustomed to trail life…and that’s what became frustrating: I never grew accustomed. I will go into mileage details in subsequent posts but instead of getting stronger every day, the heavy legs would not shake. I could not make them pedal faster and I needed regular and consistent breaks. It was sometime around Day 6 I started to acknowledge that I do have a physical limitation and that I need to respect and accept it. I realized I needed to give my head a shake and recognize the privilege I have to even be out here: I couldn’t even put my own socks on in 2016 and here I am, out here in the desert sun, biking every day for (an average) 25 miles?! What the heck can I possibly be frustrated with my performance about?
The truth is that I want to forget that part of my life. I want to forget how devastatingly difficult 2016-2017 was and how slow the improvements came during 2018. I wanted to jump into 2019 and be “healthy”, unfortunately I can’t: there is no cure for lupus. I need to accept that I will sometimes have limitations but, if I listen to and respect those limitations, I can still continue to get outdoors and push my body to do some pretty cool things.
The facts: I cycled a loaded bike 300 miles, in the desert backcountry, with no rest days, averaging 25 miles/day.
The takeaway: I can bike 300 miles in the desert for 12 days with minimal symptoms.
This means that my bikepacking (and backcountry adventures in general) are far from over! It turns out the AZT is a ridiculously hard trail and us attempting it for our first every bikepacking trip may have been…errrrr…ill-advised? The Kettle Valley Railtrail runs through a lot of Southern British Columbia…maybe I should give that one a go!
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Great post Tara and congratulations on pushing your boundaries and taking on new challenges in a way that works for you. Peddle on!